1st appt at St Mary's - what to expect/ask & when can we TTC again.

[Lucinda15]

We have our first appointment at St Mary's next week. Hopefully heading to Coventry in a few weeks to check out the immunology side of things. But in the meantime, what kind of things can I expect at first appt at St Mary's? I gather a scan and blood tests but would be interested to hear of other people's experiences to get an idea of what to expect. I'm writing down a few questions I want to ask and also a few details from the mc's so u dnt forget anything important. But then found myself wondering how long the appointment will be and how much time they will give us! Maybe I'm expecting too much from it...? I've also got scan results and blood tests and pathology report from the miscarriages.

Also - I gather some tests take 6 weeks to come back and then they are repeated. But can we TTC after the first round of tests or do we have to wait for the 2nd round as well?

Tia x

[JOMH1982]

Hi,

We went last Tuesday. I had an ultrasound, consultation, and they took quite a lot of blood for testing. I believe they test routinely for APS/sticky blood, so they take repeat bloods six weeks after the first set have been taken. My follow up for results is four weeks after that, and I believe this is standard procedure. I forgot to ask what exactly they were testing for, but even though they have provided general information in their information leaflet, I regret not asking for the exact tests so that I can "top up" with private tests to get as clear a picture as possible. Maybe if you happen to ask, you can let me know via this thread, please?

I know you can't be pregnant for either of the blood tests, and I should imagine it would be best not to be pregnant before the follow up as I think some treatment is meant to start from when you get your next bfp, but it might be helpful to check? I, like you, am keen to ttc again a sap and have lost years through miscarriages, but not sure whether to wait until my follow up in July or not.

Sorry, not sure if this has been of any help, I was quite emotional at the appointment as it was my daughters due date the following day, so it's definitely best to make a list of what you want to know.

Best of luck xx

[JOMH1982]

Ps I was told to allow 3-4 hours for my appointment, but I was seen at 9am and was out within an hour, it was very efficient without being rushed xx

[Lucinda15]

Hi JOMH thanks for the info that has been super helpful! I will deffo try and find out a bit more info on the tests for u and will let u know. I am sorry u found it emotional but totally understand. Already I have been feeling emotional just thinking about the miscarriages again and trying to remember anything of significance for the appt! I am not sure I want to TTC just yet, I think I'm happy to wait until after he 2nd round of tests at least. Still getting over it all and I'm quite enjoying a bit of a break from tracking my periods, waiting for ovulation, going thru the 2ww....yawn!!! And then eventually getting a BFP and trying not to get hopes up and then the heartbreak of losing it. It's bogged us down so much over the last year and I'm feeling a lot more refreshed after a couple of months off. Quite hesitant to get back into it again....but I will. In time! Like I say though, I'm quite happy to oblige and hold off till they have done their tests.

Good luck with it all, and if I have any info after tues I will reply back on this thread

[JOMH1982]

I am so with you about enjoying being off the ttc carousel and trying to enjoy life outside of that! Best of luck tomorrow, and yes please, if you find out anything extra around staying non preggers until results day that would be great if you could drop a few lines here please :)

J xx

[JOMH1982]

How did you get on? Hope all went well :) xx

[Lucinda15]

Hi jomh yeah it went ok. It was a bit of an anticlimax, I think I was hoping for a bit more of a review and consultation but understand this was just the Tests and scan. I felt a bit like a bunny in the headlights tho so I'm afraid I didn't get much more information than you! I had a notebook with a few questions but never found the opportunity to ask them (although I'm sure they asked if I had any!) and left still uncertain about a few things. The only tests they said they were doing were sticky blood and blood clotting disorders. I am going to call back to ask if they did any others because I can't imagine those were the only ones they do! They did advise not to TTC until follow-up. But luckily our follow-up happens to be when I should hopefully be ovulating (if cycles go as predicted) so works out ok for us. We are happy to wait until after next round of tests in 6 weeks and then TTC around the follow up.

I am planning to self refer to Coventry for immune testing when I ovulate this cycle (in a week or so I hope). Trying to cover all bases!

How are you doing? X

[JOMH1982]

Hi Lucinda,

Sorry to hear it was a bit of a disappointment, I think when you've been waiting so long you get your hopes up, don't you. Bless you, don't you worry, it's such an emotional appointment you don't always get what you want after it. I've read in their patient information leaflet that theydon't do chromosomes testing, so I think I'll go to Care for karyotyping. We had our NK test there and get the results back a week tomorrow, so will ask them about what they recommend, as we have a healthy daughter (4) already, so want to make sure we get the tests we need so we can be informed for future. Looking at getting hubby tested as well, as it's not all down to the woman, is it?

Emotionally, it's hard going. lots of my friends were expecting around the same time as me, and losing our daughter at 20 weeks just broke us. I'm not sure how we would handle another loss, so hoping there is an answer from some of these tests.

I wonder if they do hormone testing as well at st Mary's? Their leaflet doesn't mention it....hmm!

I think we will hold off ttc then until a few weeks before the follow up, depending on my cycle, just in case they find anything.

Thanks v much, I'll keep you posted, let me know how you get on xx

[freelancegirl]

I went four years ago and it felt great for something to finally be happening in terms of investigation and treatment for my miscarriages. This might just be because I also saw Mr Shehata at the Miscarriage Clinic/Epsom hospital, but I was disappointed with St Mary's in comparison as they only really seemed to check for clotting issues and don't (well didn't at the time, not sure if that had changed) test for immune issues such as natural killer cells. The trouble is the people at the top all seem to disagree with each other in some ways! I was eventually found to have a high level of natural killer cells by Mr Shehata and on his treatment was able to have my two children. St Mary's ultimately didn't do anything with me as I had no clotting issues. But it was good to have a certain test they do (have forgotten the name) for a clotting issue that only shows up once you are pregnant. They would have only told me to take aspirin, which I was already on when I saw them.

I'm therefore glad you're going to Coventry to have your immunes tested too.

Good luck! I had a total of 5 miscarriages so I know something of what you're going through. Rest assured you're now getting investigated.

[Lucinda15]

Thanks both! I didn't even get a patient advice leaflet from st Mary's! Should there have been one?

Also, I've been hearing more and more about shehata - does he do same sort of thing as Coventry? Am I right in thinking his tests might be a bit more expensive? Any ideas? Not sure whether I should avoid over egging the pudding and just stick to st Mary's and Coventry....

Bit confused and a little disheartened....

[JOMH1982]

Don't you worry, I didn't either, I asked for an electronic copy as I was in email contact with one of the administrators and she sent it to me after my appointment. I'll try and work out how to upload it!

I know what you mean, but stick with your plan, there are so many clinics and they all do pretty much the same stuff, and you've got a very good spread there to cover you for answers :) xx

[Lucinda15]

I emailed smh and think I got the same info leaflet that they emailed you. It doesn't say anything about thyroid or any other tests than the sticky blood and clotting issues they test for. Bit disappointed to be honest, thought they might do a broader spectrum....quite confused.

[JOMH1982]

I wonder if a full blood count and thyroid function could be undertaken at a GP surgery? I think those two and the karyotyping are the ones they don't do, along with the immunes. It is stressful, isn't it, I thought they would have done more xx

[Lucinda15]

Hmm. Yes I feel it's been a bit of detective work to try to ensure we are getting the right tests. Between my local rmc, smh and Coventry we should have all bases covered. But it's bogging me down a bit....

I am waiting to see my local rmc for the routine recurrent mc tests (fbc and thyroid - I assume!!) but they advise waiting until 3rd cycle after mc. Which will be next month! Dragging on and on! But at least balls rolling. I might see GP to ask for thyroid anyway, just in case.

Thanks for the advice and support tho, means a lot xx

[JOMH1982]

It is very stressful,but I think the full blood count and thyroid could be done at your gp surgery, and you should most definitely gave everything covered with what you have planned anyway. It's the waiting that sucks, isn't it. I'm ready to try again now, but waiting 7 more weeks seems like an eternity. Just want to know now whether there is anything wrong.

I wish you all the best. I'll update about how I get on at st Mary's, I have my follow up on 12th July so probably only a few weeks before you xx

[freelancegirl]

I managed to get a few more tests out of my GP too. Thyroid I have regularly anyway as I do have a thyroid problem, but also managed to get full blood count and a few of the thrombophilias. I used to have a list of these and wish I could still find it. Factor V Leiden was one of them I think.

I'm afraid you do end up having to become your own detective with recurrent miscarriage. They don't all do the same tests. Since having rmc I did a lot of work that involved interviewing the people at the top and there are certain areas in which they disagree with each other, like I said previously. Professor Quenby at Coventry IS doing some research into natural killer cells and does use steroids and other immune modulators to a certain extent but not to the extent Mr Shehata does.

[Lucinda15]

Thank you both. It's good to talk to people who understand. I think st. Mary's has made me wobble a bit. It reopened the wounds. And they weren't very positive and I left feeling so deflated. And I'm just not very hopeful about the future. I'm scared to try again and I can't see it happening for us.

I've been quite proactive and tried to do a lot of research and I guess its beginnings bog me down. It's not easy, and you are right, you have to become a detective and I've found myself very confused at times about what to do and where to go.

johm my follow up at smh is the 26th July - good to know someone at the same sort of stage as me! Keep me posted on how you get on.

I think I will see the GP for thyroid tests and fbc. Funnily enough, I stumbled across thyroid problems in an unrelated search on Internet last night! My hair has been incredibly dry and brittle and just awful since my first miscarriage last summer. It was a traumatic miscarriage and I lost a lot of blood (passed out several times and was admitted to hospital via a&e for drips etc). I put my hair down to the blood loss and lack of vitamins or hormonal imbalance after that. But apparently dry hair can be a symptom of thyroid problems, and when I looked into the other symptoms I found I have more. It could be something, or nothing. But I will go see the GP and get that test done rather than wait another cycle for my local rmc to do it.

Thanks again for the advice and support.

[JOMH1982]

Oh no, what did they say? I guess they can't make any promises at that appointment as they don't know any results? Of course you're scared, I'm terrified too, never thought I'd have a late loss as well as the other earlier losses, it damages you emotionally, but all the stats say that you're still more likely to have a baby after three or more miscarriages, so just got to be strong. and the next time shall be better anyway as you'll be armed with the test results so you can rule in or out any potential conditions.

I've also discovered that it's a minefield out there. There are many clinics, with many views, and many of which differ in what they believe and test for! You will have a good spread of results from your plan, so don't worry. And I think we feel we have to search for an answer, even though it mightbe a case of there not being one, and we mneed to prepare ourselves for that.

I was convinced I had uterine scarring, andconvinced myself that I would never fall pregnant again, and that Faith was our last chance for a sibling for our daughter, but it turns out I don't. It's natural after all this to think we have something wrong with us,just try not to get yourself too worried before you get some answers

Yes of course, I'll keep you updated. I get my NK result back on Friday, so I'll feedback...eek...xx

[JOMH1982]

Hi,

I just thought I would let you know how I got on with my appointment at Care today and NK tests...I bombarded the poor consultant with lots of questions!

• level two results - mixed bag, some were elevated, some weren't. She (Dr. Elsen) sits on the European committee and said that there is still a lot of debate about the validity of the test, but that it has more of a place with IVF and it would be at the very bottom of her list of anything that may be wrong with me as we have a daughter already. There are specific times to deliver steroid treatment and/or intralipids with IVF, but no clear cues with natural conception.
  
• karyotyping - based on our history, this would be of limited value. We could do the tests, but even if they found something, IVF would only improve our chances by a couple of per cent and so she said we can do this for peace of mind but the fact we have Our daughter and we had a later and unrelated late loss, she said it was low down on her list of what might be wrong, if anything
  

-thyroid - this was interesting! I mentioned my irregular periods and she asked whether this Been checked as it can be one of the most common causes of recurrent miscarriage (30%) especially after a healthy delivery and for women in their 30s, so we are going to get this checked out for definite

We were advised to go for the thyroid test for ?TSH and T4, just in case you still want to get yourself checked out, as she said sometimes they only do one test, so ask for both. She basically said we've been incredibly unlucky and with regular cervical length scans and infection screens I stand a good chance of having another child in the future, but still nervous! She said Asherman's is not likely, which was one of my original concerns, but I shall take it as a question to St Mary's in July anyway.

Hope that's useful, and that you're doing ok xx